@NS w/dad "Ask does she have CM/SM" NS says A WHAT

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Postby SMLady » Tue Jun 19, 2007 10:06 am

Hi. I was just wondering what mistermeaner chiari is. I only have SM, so I'm not that familiry with CM,but I'd never heard this term before. Also, what does "Laisez les bons temps rouler" mean?

Take care. HOpe you are having a good day. :)
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Postby razzle51 » Tue Jun 19, 2007 10:26 am

I was wondering the same. thanks :roll:
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby blue1 » Tue Jun 19, 2007 1:52 pm

Hi Ya'll :D ,
I meant is a micro/minor chiari only extra fluid around the the cerabellum and a giant cisterna magna and foreman that cause me excruciating headaches.
Cajun French French down here in good old post Katrina New Orleans
8)
"Laisez les bons temps rouler " means "Let the good times roll" 8) Ok Cher
"Cher "(sha) Term of endearment or "my sweet" :)
"C'est la vie" ( say la V ) "That's life" :wink:
"Comme ci, Comme ca" (come-se, come sah) " So - So" :?

It's Is fun sometimes and down right frustrstrating to understand at other times, :)
Thanks for Asking,
Oh--- Cher,
blue1
Last edited by blue1 on Tue Jun 19, 2007 2:10 pm, edited 2 times in total.
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Postby blue1 » Tue Jun 19, 2007 2:03 pm

CM is a Chiari Malformation.
http://www.wacma.com/
http://asap.org/resources/coping.html
Hope this helps!
blue1
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question

Postby razzle51 » Tue Jun 19, 2007 2:16 pm

what do you mean by last post ?? This is ASAP site or the message board . we were asking what is mistermeaner chiari ? I have CM
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby SMLady » Tue Jun 19, 2007 2:34 pm

Gotcha. Thanks for the translations. I'm going to use those sometimes.

Take care.
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Postby blue1 » Tue Jun 19, 2007 2:43 pm

Hi Ya'll :D ,
I have no idea about last post I did not put that in, it must have been the board or whatever. Mistermeaner is just mispelled for misdemeanor. Like insufficient not adequate enough to be a full chiari. I am sorry sometimes my memory is really bad I had ECT treatments in 1996 and my memory has not the same since and this syrinx and microscopic chiari doesn't help.
I could not find the dictionary 'cause I could not remember how to spell it.
Forgive me please for the misunderstanding,
Blue1 :oops:
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Postby blue1 » Tue Jun 19, 2007 2:51 pm

Hi Again,
I thought by taking my dad would help me have some support. but it all backfired just like my whole life has! Maybe this this new NS will make the difference and believe me.
blue1
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Postby precious » Tue Jun 19, 2007 5:33 pm

I am so excited to hear that you got an appointment with a new Dr and you will be by your self. This way if he is good and can see the connection that many of us know that you have you will have that behind you to help with your family for the future! And a sympathetic Dr who believes your not crazy is always nice to have. It sounds like you are more cheerful today than in past posts. That is also posotive keep up with that!! It's nice to read when your having a good day
~Precious~

SM T-6/T-12 8.2 mm
Only you decide how bright your day will be!
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Postby kittb » Tue Jun 19, 2007 7:03 pm

Mine is from my t-3 tp my L-1, and it causes me a whole slew of problems. If yours is from your T-1 to your L-1 it's longer than mine, but what the doctor may have meant by its too small may have been referring to the width of it. If it's narrower than most, the doctor may not feel up to the task of drilling in through your spinal column to insert a tube for the shunt surgery. Mine is only two to three millimeters wide which my NS doesn't feel he can perform surgery on because of the risks associated with missing the syrinx and having to go back in to find it. I hope you're at least being given pain medication as necessary.
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If you ever lose yourself, call on me and we'll be lost together-Kitt
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Postby Silverwolf73 » Tue Jun 19, 2007 9:57 pm

Hi Blue!

I just wanted to pop in here and chip in my two cents. As far as educating your family, you might want to consider sharing some education from the only Chiari experts...Dr. B and the others from TCI. Here's a link to the videos. You might want to prescreen them and show your family the ones that pertain to you...

http://www.northshorelij.com/body.cfm?i ... inkID=6407

As a sidenote, have you considered going to TCI? I'm in the process myself, and I know there are organizations to help you get there and be taken care of. With your "Chiari Zero" diagnosis (minimal herniation) you will have a very hard time finding a NS that will operate. Have you had a complete spinal MRI? If so, where does the conus (end of spinal cord) lay? (The normal placement is around L1 or L2.) The urinary issues could possibly be related to a tethered cord.

I wish you the best of luck in all things, and if you need to vent privately, drop me a line.

Blessings,

Renee in Ohio
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Postby kiminfla » Wed Jun 20, 2007 10:20 am

Renee, Welcome to the board. I read your other posts and certainly hope all is well with your recent breast procedure. And I hope you can get the answers you need about your current symptoms. I just wanted to ask why you would write that Dr. B and others at TCI are the only Chiari experts??? Dr. Oro, Dr. Bejanni, Dr. Menezes, and Dr. Green as well as a few others are also considered to be experts. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby Silverwolf73 » Wed Jun 20, 2007 10:50 am

Hi Kim!

I'm sorry for any offense...I've been dealing with Chiari since 2003, and although I've heard one or two of those names, TCI is the most predominant Chiari entity. I have heard nothing but good results from there. I shouldn't have said *THE ONLY* but rather *ONE OF THE FEW*. I guess I've got my sights set on New York. Like so many others, I want this journey to be over with, and I'm making my way to someone that knows what they're doing. Once again, I'm sorry, and modify my statement.

Blessings,
Renee in Ohio

PS All is well with my BC surgery...the bandage comes off this afternoon and I'm ready to get back to normal activities. Thank you for your concern. God Bless
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Postby blue1 » Wed Jun 20, 2007 10:51 am

Hi Ya'll :D ,
Someone :oops:
got the wrong person,
My breasts are ok and I never heard of those doctors. I live way down here in New Orleans post Katrina on medicare b/c of a mental problem from long ago and don't have alot of $ to go far to see any doctor.
I am going to see a new Doc though. A NS Named Dr. John Walsh. I do not want surgery and I am not looking to have it I am looking for for someone who knows about CM&SM's to help me fiquire if my symptoms are the cause of all my problems (physical)
Thanks for answering me,
blue1
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Postby Ryzing » Wed Jun 20, 2007 10:58 am

Hey Christine!

Kim was referring to someone else - a new person named Renee, when she was asking about the breast surgery.

Glad to hear your breasts are okay, though... :D

Diane
Last edited by Ryzing on Wed Jun 20, 2007 10:59 am, edited 1 time in total.
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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